Mandatory Reporting of Seizures Can Have Negative Impact

Embargoed for meeting release until 8:00 am HT, Wed., April 2, 2003

Honolulu, Hawaii – Requiring doctors to report their patients'''''''' seizures to the state can lead patients to withhold information from their doctors and can harm the doctor-patient relationship, according to research presented during the American Academy of Neurology Annual Meeting in Honolulu, March 29-April 5, 2003. The study surveyed epilepsy patients in California, one of six states in the country requiring doctors to report any episodes of loss of consciousness to the state health department. Some patients had already concealed information about their seizures from their doctors in fear of losing their drivers'''''''' licenses, and others had considered doing so, according to the study’s lead author, neurologist Kamala Rodrigues, MD, who was at Stanford University in California when the study was conducted and is now practicing in Ann Arbor, Mich. "This is dangerous, because if doctors don''''''''t know that their patients are having seizures, they can''''''''t work with them to alter their medications to control the seizures," Rodrigues said. "The law was designed with the assumption that it would protect public safety, but there''''''''s no evidence to prove that assumption is true. This study shows that mandatory reporting may lead to more uncontrolled seizures, which could be a greater risk to the public." The survey was given to all adult patients of the Stanford Epilepsy Clinic. Replies were anonymous. Of 402 surveys sent, 207 were returned. Of those, 44 percent were currently driving; 77 percent had driven in the past. Of those who responded to questions on concealment, 8.6 percent said they had concealed information on their seizures from their doctor due to fear of losing their driver''''''''s license. Nineteen percent had considered withholding seizure information. California''''''''s mandatory reporting requirement had a negative impact on their relationship with their doctor, according to 22 of 166 patients responding, or 13 percent. "Our concern is that this will at least weaken the lines of communication between patient and doctor and at worst cause patients to go without treatment if they avoid medical care," Rodrigues said. "Not only is this dangerous to the health of individual patients, but it also defeats the initial goal of the mandatory reporting law." Driver''''''''s licenses had been suspended for medical reasons at some point for 42 percent of the 162 patients who were or had been drivers. Thirty-nine percent had previously been in a car accident. Of those, 26 percent (10 percent of all respondents) believed the accident was caused by a seizure. Another seven percent said they did not know whether the crash was due to a seizure. Patients whose license had been suspended previously for medical reasons were more likely to conceal or consider concealing seizure information from their doctors, Rodrigues said. Among those with prior license suspension, 21 had concealed information or considered concealing information and 41 had never concealed information or considered it, compared to 12 who concealed information or considered it and 67 who did not among those who had no prior license suspension. Four out of every five patients reported that they would voluntarily stop driving if they had a seizure, whether or not the state had a mandatory physician reporting law. "This high percentage, along with the significant percentage who admitted concealing information, suggests that policy-makers should consider eliminating mandatory reporting of seizures by physicians and replacing it with a voluntary system," Rodrigues said.

The American Academy of Neurology is the world's largest association of neurologists and neuroscience professionals, with 34,000 members. The AAN is dedicated to promoting the highest quality patient-centered neurologic care. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as Alzheimer's disease, stroke, migraine, multiple sclerosis, concussion, Parkinson's disease and epilepsy.

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Editor's Notes:Dr. Rodrigues will be available to answer media questions during a briefing at 8:00 a.m. on Wed., April 2 in the AAN Press Room, Room 327 of the HCC. All listed times are for Hawaiian-Aleutian Standard Time (HT).


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